Welcome! This blog reflects more or less my description of living with Usher syndrome, my CI (cochlear implant) journey, my guide dog journey, and any random thoughts I may want to post.

Sunday, October 22, 2006

Golden Glow of Light

Some nights I would be watching TV, and I could just see the lamp in the far corner of my eye. It would bother me. I would try to move my head just enough so that it would be in my “blind spot.” This blind spot is the "doughnut" area between the corner of my eyes and the center-kind of like a doughnut in front of my eyes-I can't see through that area. Sometimes I would tell one of the kids to turn the lamp off. I would continue to feel like the lamp is on. I would repeat, “Please turn that light off,” or I would proceed to just turn it off myself. But I would find that the lamp is off. The room is dark except for the TV. It was weird.

I noticed that it happened a lot. I would get that feeling that the light is on. This strange golden glow would appear as soon as I turned out a light in the dark. It doesn’t help me see any better, though. I would lie down on my bed, bathed in this golden light. I think of it as angels watching over me.

I found out that some people with RP get this.

Other times, I would get a “light show” or swirls of light circling in my eyes. Sometimes it would come out of nowhere. Mostly, though, when I am exercising or exerting myself, I would get these lightning flashes. (Lightning flashes, light show, and swirls of light are pretty much the same thing. These are just what other people with RP have called them.) They may vary for each person who has RP. Even for those within the same family. My brother and sister have a different rate of vision loss than I do and it (RP) affects us differently. My sister doesn't have the "islands" or "holes" in her vision that I do. I can see out of the corner of my eyes, but she can only see straight ahead.

It makes me wonder if sighted people with normal vision see things differently. People wear glasses for near-sightedness or far-sightedness. Some just wear glasses for reading. Some are color-blind. We all see things differently. I just wonder about the fact that, once being fitted with glasses, do they see 20/20 again? Is there something that can’t be corrected? Maybe no one really has perfect vision. Of course, I do wish RP was that simple to correct; just find the kind of glasses that can correct RP. If only it were that simple.

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About Me

Living with a genetic disorder called Usher Syndrome Type II. It's a gamble-each parent must have the same gene to pass it on to the child. There's a one in four chance of passing it on. One is born with varying degrees of hearing loss and loss of sight caused by a retinal disorder called retinitis pigmentosa (RP).